My experience

Hello everyone: This is my first posting here so trust I am doing it right. I was diagnosed with stage 4 lung cancer after having fluid drained from around my right lung in September 2019. My oncologist decided the best treatment for me was the targeted therapy (Giotrif). I started out on 30 mg. and was then changed to 20 mg. on account of the side effects I was having. The 20 mg. seems to be working fine for me. I still have a few side effects, like diarrhea on & off, bit of blackening on toe nails, dry nasal passages and very dry hair. These I can live with. Apart from that, I am doing quite well and from my last CT scan, there are no new tumours which makes me very happy. What scares the heck out of me right now is this stupid COVID-19. I have been sticking to home for the past 6 - 7 weeks and getting to the point that I need to get out. Thankfully, we live in the country on 10 acres so are able to go outside for fresh air and exercise without interacting with other people. Another thing that makes me very angry is that I am a lifetime non-smoker. I come from a large family and I was the only one who did not take up the habit and I get lung cancer. Oh well, we all live day to day and all we can do is hope for the best I guess. Keep well & safe!!

Peanut123‍ welcome to the site and thank you for introducing yourself. Pat yourself on the back for your first successful.

I'm sorry to hear about your diagnosis but I'm glad to hear that you are receiving something that seems to be working. I can also understand your frustration with being the token no -smoker and being the one to develop long cancer. Did everyone else smoke in the house so you were exposed to second hand smoke? My son just recently stopped smoking but has always done his smoking outside. It's frustrating when smokers don't truly appreciate what they are doing to the people around them.

As for getting outside, it sounds like you have an awesome place with all that land. So many people on this site talk about the benefits of getting outside and walking or running. Good for you.

Since you are already in the Lung Cancer section of the site, I'm hoping you have found lots of useful information and other people in your shoes.

If there is someone whose posts you really seem to identify with you can tag them in a post by putting the @ symbol just before their name.

Please feel free to post questions, give updates (both good and bad) and vent as needed.

You have come to the right place. While I have not had lung cancer, I have had breast cancer and the emotions that come with that bridges all cancers.

Thanks for the response. I am also very sorry to hear of your breast cancer. How are you feeling and are you finished your treatment now or is it ongoing? Hope all turns out well for you. I am doing relatively well, some days are better than others but a lot better than at the beginning and I did not want to talk to any body but thankfully I have a very supportive family and friends. This was very hard on my husband at the beginning and I thought he was mad at me for getting sick but he was just mad at the world I guess. He is not a talker so will not voice how he is feeling. He seems to have accepted it now. Perhaps he thinks I am going to be around for a long time and maybe I will. We can always hope. Thanks again.
Peanut

Hi, Peanut123‍ , welcome. I’m glad you found this site! I’m caregiver to my Dad - also “stage 4”/ metastatic lung cancer. His Mets were discovered last summer and he’s been in a chemo and immunotherapy regimen ever since.

I’m going to tag WestCoastSailor‍ Into the conversation - he usually has a lot to say about the “stigma” around lung cancer and smoking. I’ve known several non-smokers who developed lung cancer, so it certainly does happen.

Covid-19 has thrown all of us - patients and caregivers - for a loop. I have a good friend who sometimes reminds me about the “stories we tell ourselves,” and she would probably say that “getting to the point where I need to get out” would be one of them.

When the pandemic first hit, I was like that - suddenly, I wanted to shop like I’ve never shopped before! But, as time has gone on, I’ve “changed my script.” It started by spending time in my living room feeling grateful that I have this place in which to shelter, and slowly worked up to burning off some of that energy by — oh, scraping the trim in the living room window that needs paint (and caulk, as I discovered), pulling the furniture away from the baseboards and vacuuming and cleaning right to the corners, cleaning windows, etc. (Even the front hall closet has had a work-over!)

It is possible to be just as satisfied with thoughts of staying in as it is with thoughts of going out. One of my favourite self-help authors is Louise Hay, and my favourite line of all her writing is this quote: “A thought is a thought, and a thought can be changed.”

It’s good to know that your treatments are working, and I wish you continued positive outcomes with it.

“When the root is deep, there is no reason to fear the wind.” - Japanese saying

About 20% of lung cancer patients are nonsmokers. Radon accounts for about 15% of that leaving 5% with no good reason for their cancer. I went through a whole cycle of trying to figure it out but as my oncologist pointed out - I'll never know and my job now is to focus on living.

You won't hang around lung cancer too long before you run into the stigma. "Did you smoke?" is the most common question I get after someone learns that I have lung cancer. I've gotten to the point where I don't answer it directly. "Does it matter? Don't smokers deserve to live too?" Governments seem to think their duty is done with antismoking campaigns and high tobacco taxes. But that stigma affects everything from early diagnosis - oh it's just smokers cough is a pretty common reaction - to research dollars. While $25 million last year in Canada sounds like a lot. It pales in comparison to money spent on other less prevalent forms of cancer. Drug funding is the latest issue to be sideswiped with the stigma. For EGFR+ patients afatanib (GioTrif) is being replaced by osimertinib (Tagrisso) a much more effective drug with reduced side effects and the ability to cross the blood/brain barrier and prevent brain mets. But patients are being kept on the cheaper drug to save money.

I'm glad to hear that you aren't seeing progression. That's the best we can hope for. I'm coming up to a year on afatinib (40mg) with only the occasional bout of diarrhea. And if I would stay away from spicy or greasy foods I probably wouldn't even have that.

Welcome to the club nobody wants to join. Do you have any questions you would like answered?

My oncologist told me I would be on Giotrif (or the equivalent) for the rest of my life. Good to hear you are doing well, it is a difficult thing to go through. Are you considered being in remission now? I don't quite understand at what point it is remission or if you don't reach that point when you have Stage IV Lung Cancer. It is one of the things I need to ask my oncologist when I talk to her next week.
I am assuming you are from BC from your name. I am in Ontario and am very happy with the help I have been getting from the cancer center where I go.
Thanks for your response.

Great post, and as West Coast Sailor said welcome to the club nobody wants to join. I was diagnosed in April/May of 2019 and was on Afatinib for about 9 months. It was working but some bad side effects. Now I am on Tagrisso which I'm super happy that Alberta covers it. Much better and my C's and MRI's are coming back with good results. Still some nagging issues but hey I've got a disease there will be some issues. the best thing I've learned in the past year though is when you are feeling good, make life the best you can and don't waste your cancer so to speak. LIVE!

Sorry for your diagnosis but glad to hear you are having successful results with treatment.
I am a 3 1/2 year survivor of stage 3 lung cancer so different treatments than you I was not treated with immunotherapy but with chemo and radiation so I can’t comment on your treatment.

I agree with everything WestCoastSailor‍ stated in regards to funding and research for lung cancer and the stigma of smoking. Smoking is a big cause of lung cancer but not the only cause and nobody should ever have to answer that question nor has anyone have the right to ask it of someone who is facing such a devastating diagnosis.
I will tag jorola‍ as I believe this statement can be attributed to her... if you have any glass in your house you shouldn’t throw stones at someone else’s.
I think most cancer can be traced to some kind of bad habit wether diet, lack of exercise or all kinds of environmental issues.

Thanks for the tag Faye‍
I wish you all the success in your journey and treatment Peanut‍. Great news there on your last scan. May each one just continue to get better and better.
As for lung cancer and the stigma attached to it, honestly I do not comment any more. I just find it too upsetting. I just don't even want to get in to it. Some battles are not worth my time and energy as my time and energy are precious to me.

You know I actually don't mind when people ask me if I smoked or not because when I tell them about the lifestyle I led leading up to the cancer they are surprised. I am a runner, Ironman triathlete, finisher of many ultra races and never smoked obviously. It gives them something to think about that if I got it they most certainly can as well.

Good point DaveNitsche‍ , about not minding when people asked you if you smoked, and the light you are shedding on their own potential rrisk of getting cancer themselves when they learn of your very healthy lifestyle.

I find the same with breast cancer. The first question asked not only by friends and family, but also by doctors is "what is your family history of breast cancer?"
Which is silly because studies show that 75% of women who developed breast cancer indicate no family history.
I like what youroncologist said, WestCoastSailor‍ : we may never know. Our job is to focus on living.
But we are inclined to want to understand more, and to put up flares and red flags for others, even if it's too late for us!

While I understand the purpose of these initial screening-type questions it does foster a false sense of security in those not yet affected by cancer, who think "whew, that doesn't apply to me, so I'm safe."
And then we hear of far too many cases of late-stage diagnosis because of an abundance of head-in-sand mentalities.

Peanut123‍ - good question about understanding whether or not you are in remission. I am considered to be in "full remission" because there is No Evidence of Disease (NED) but I wonder if you are in some type of remission as well because there is no progression? Let us know what you learn next week.

Had my blood work done today and my doctor called me with results. Everything looks really good and I am now in what she refers to as "partial remission". This is all great news for me and I will continue to work hard on keeping it that way. I am still very nervous about COVID-19, am being really careful and still trying to stay at home as much as possible. Hope everyone else here are keeping well and staying safe.

Rayline, Yes I can still train, but not nearly as much as previously. when I feel good I do as much as I can. I always say to myself "someday I won't be able to do this, but NOT TODAY! Get going". Hope all the best for you. LIVE and Don't waste your cancer!

Partial remission is good. I like describing it as stable. Or the term no progression. I'm hearing a lot more people starting to thing about it as a chronic condition. It helps move the emphasis to learning to live with it. Developing quality of life can be as important as quantity of life. And for each one of us that is different.

There is a fine balance between denial and realism that we walk with hope each day. LIke DaveNitsche‍ Today I can do this so I will. There may come a time when I can't and I'll deal with that when it arrives.

Angus:
Thanks for the positive vibes. I have accepted it and it is my way of life and I plan on living as good as I can. It will be so much better when I feel comfortable enough to get out and about but not just yet. I have a very good spouse who runs errands and does not seem to have a problem with it even though I get guilt feelings at him having to do everything. Anyhow, life is what it is and have to make the best of it.